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Purple Day Orlando 2024

This weekend, Milo&Me had the amazing opportunity to attend Purple Day Orlando, which Cassidy Megan, the Anita Kaufmann Foundation, The Epilepsy Association, and Jazz Pharmaceuticals hosted. 


So, let's start from the beginning. One snowy day, my good friend Kate at Char Bear Keeps Dancing sent me an Instagram post for purple day at Disney. Initially, I didn't think anything of it- but a few days passed, and I kept thinking about it more and more. I've always been a persistent person. You can never escape an email from me! I will be back until you respond. So, after emailing and not getting a response- I think I emailed the wrong place, LOL. I knew there was a time crunch. I knew I needed to act quickly with the event being in March and finding out about it in January. So, after mustering up the courage, I decided to call the Anita Kaufman Foundation. Within seconds, Debbie picked up the phone. I was immediately greeted with kindness, positivity, and encouragement. That day, I was accepted into Purple Day. 


Leading up to the event, I was so anxious. This was a big step for Milo&Me. It felt like we were little fish in a big pond. This event felt so risky, considering it was far from Connecticut. Money isn't everything, and it will ✨eventually ✨ come back. But when you're paying for hotels, flights & park tickets, that's not even including meals and living expenses- things add up and get intimidating quickly. I felt an insane amount of pressure. All I knew was that it didn't matter how much money we made- I just wanted things to go well enough to have a reason to return next year. So, despite being so anxious to the point of making myself sick the week before, the day had come when it was time to pack up my things and head over to the happiest place on earth- specifically leave for the airport at 5:15, you know, the ungodly hour where nobody is happy? 


Two hours and 25 minutes later, we landed in Orlando. I also fear flying, which is funny because I've been flying since I was nine months old. Either way, I handled this flight like a champ. We got settled in and prepared for the next day, which was purple day!


The day had come; I was so nervous I could barely sleep the night before! We packed everything up, got to the conference, and our setup began. Now, I will say. If you ever see me setting up at any event, be warned: I am not the kindest person when I'm setting up. I want to get everything set up, and then I will kindly talk to you in a non-stressed manner. Once I finished up, I got the chance to briefly speak to some other amazing non-profit owners and advocates, such as Julie Hutchinson from the Chelsea Hutchinson Foundation (whose speech made me cry), Brigid Baffico, Greg Grunberg, McKinley Sommer & Lizzie Sordia. The entire day was epilepsy advocate HEAVEN. I was literally in awe all day talking to all these fantastic advocates in the community. How could I be in the same room as all these advocates, doctors, and NPO owners??? 


The time had come when everyone came to the expo hall. At most of my events in the community, we do okay. Most of our events look better on social media than in real life. I was expecting something similar to that. I like to prepare for the worst but expect the best. The guests were supposed to come in at 12. 12 hits, and nobody came in. My heart sank. THEN. 12:01 hit. It was absolute mayhem. At one point, we had ten customers at my table. That is unheard of for us! Then one person picked up our shirts, and then another. At first, I thought it was a fluke, but then more people came!!!! At one point, I started tearing up at how surreal this felt. I have dreamt of this many people loving my items and mission, this many people with epilepsy feeling seen, this. Much. Love. I was almost entirely wiped out by the end of the day. 


For a while, a day like this felt impossible. But after this weekend, I realized I don't want days like this only to be a once-a-year occurrence. I want it to be a regular thing. I want more for my organization. Maybe this is the story of how I move out, but I can't keep reaching for the epilepsy community in Fairfield County that is extremely ashamed of their epilepsy. I want to change that in my community, but they aren't ready. Most of my clientele at home are people who run away when they say they have epilepsy. I think it's unfortunate that this is what we've done to an entire community in one state. We've shunned and ostracized people with epilepsy and the result is grown adults who are terrified. When you go up the line in CT you don't have this problem! In fact their epilepsy community is pretty lively. I'm not shaming people with epilepsy who don't feel comfortable sharing their story. I'm shaming the people who put this stigma on other. I'm here to fix this, but others need to get a grip and get in line. How DARE you make someone feel this way because of a disability.


After this weekend, I've realized there's more for my organization out there, and I'm truly excited about where that will take me.



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I'm so proud of you Sophia!

いいね!
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